The Rare Diseases Clinical Research Network (RDCRN) Contact Registry[1][2] is a patient contact registry started in 2004 and sponsored by the National Institutes of Health (NIH).
Established by Congress under the Rare Diseases Act of 2002, the RDCRN is an initiative of the Office of Rare Diseases Research at the NIH's National Center for Advancing Translational Sciences.
The contact registry collects basic data (i.e. contact information, diagnosis, medical history) to be stored in a secure, computerized database hosted by the RDCRN's Data Management and Coordinating Center based at Cincinnati Children's Hospital Medical Center.
It also offers RDCRN investigators and patient advocacy groups access to data that will help them assess the feasibility of conducting a proposed study.
The RDCRN Contact Registry is operated by the Rare Diseases Clinical Research Network which is funded by the National Institutes of Health and led by the National Center for Advancing Translational Sciences through its Office of Rare Diseases Research.